MERRY CHRISTMAS!

 Every body pauses and stares at me

I use oxygen as you can see

I don't know just who to blame for this catastrophe!

But my one wish on Christmas Eve is as plain as it can be!

All I want for Christmas are my two new lungs,

my two new lungs,

can't wait to breathe with my two new lungs

Gee, If I could only have my two new lungs

then I could shout, "Merry Christmas!"

Seems so long since I could say

anything without being winded

Gosh, oh gee, how happy I would be

if I could only whistle

All I want for Christmas are my two new lungs,

my two new lungs,

can't wait to breathe with my two new lungs

Gee, If I could only have my two new lungs

then I could shout, "Merry Christmas!"

Thoughts that keep me awake at night

Lately I've been thinking about the person who will be donating their lungs to me.  They are about to enjoy the holidays for the last time.  Are they away of their coming demise?  Do they have a premonition, a hint of things to come?

I have been praying for blessing for them and their family, that this holiday season will be especially memorable.  I intercede on their behalf, that they may fully understand the meaning of Christmas.   I have been praying they are ready  for an eternity of peace with no more tears, no more hurts, no pain.

I do not understand the complexities of life and death.  How God uses ALL circumstances.  Their tragedy will be my benefit.  My good and their pain flowing together in a grand scheme that is good  is beyond  my ability to comprehend.

So I live in a sense of awe, anticipation and bewilderment.  I pray and I trust. I am thankful that God is in charge so I don't have to be.  His timing is perfect.  His intention for me, for my donor, for all humanity is for good.

The Next Step

 Need You Now

Well, everybody's got a story to tell
And everybody's got a wound to be healed
I want to believe there's beauty here
'Cause Oh, I get so tired of holding on
I can't let go, I can't move on
I want to believe there's meaning here

How many times have you heard me cry out
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.

Standing on a road I didn't plan
Wondering how I got to where I am
I'm trying to hear that still small voice
I'm trying to hear above the noise

How many times have you heard me cry out
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.

Though I walk,
Though I walk through the shadows
And I, I am so afraid
Please stay, please stay right beside me
With every single step I take

How many times have you heard me cry out?
And how many times have you given me strength?

How many times have you heard me cry out
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.

I need you now
Oh I need you
God, I need you now.
I need you now
I need you now

-Plumb

http://www.youtube.com/watch?v=9ylnx0NA9X4

The draw of the ocean.

I  want to flee to the ocean, be still  and watch the sun set.  The continuous waves brings a rhythm to life that I long for.  The vastness of the water reminds me that there is a bigger picture; always more then what we can see.

Today is done,  finished with more questions and less answers then  yesterday.  I am lost at sea, afloat on a life boat with holes, water tumbling in faster then I can bail.  I want to sit on the shore.

Hurry Up and Wait

I know I need to be patient.  I need to wait.  I will practice waiting  in the coming days.

I know organ transplant is a mixture of science and art.  There will be no exact timing as to when the surgery will happen, how long the new organs will last, what complications or ease may befall on me due to this endeavor of a bilateral lung transplant.

I am tired of waiting; tired of wondering if they will accept me as a candidate.  Am I finally sick enough?

Tomorrow the team of experts at Duke hospital in Durham, NC., will come together and view all of the test results from last week's evaluation.  Tomorrow they will call and let me know what is next- yes, no or maybe.

Yes, come on over, start the pulmonary rehab.  Time will tell if I am truly ready or not.

No, We won't be able to transplant you due to ___________fill in the blank.  Certain bacteria, certain complications will keep you off of their list.

Maybe, start the rehab, see how much healthier you become, see if you can buy more time with your native organs.

I'm tired of waiting, tired of life in limbo- Do we move to Durham?  When do we move to Durham?  In the middle of the Christmas season.  I'm too tired to decorate one house, much less two if we move before Christmas.

So tired....time to rest.

Pre-transplant Evaluation

This seems surreal, I've been talking about transplant for soooo long; hard to believe it's really happening.

And so it begins.......

Day 1: 9 hours, 5 appointments- I completed a VQ scan and a CT scan of the lungs, 26 vials of blood drawn, chest x-ray taken, urine and sputum samples donated, a tetnus booster shot and a pneumonia vaccine received and a consult with infectious disease doctor.

Delicious ropa vieja for dinner at the Cuban revolution cafe. Time to call it a night. I am tired. Tomorrow's first appointment begins at 7:30am. Thank you everyone for your prayers and support.

Day 2: 10 hour day included ultra sound of the liver, meetings with nutritionist, surgeon, heart cath consult and an esophagography test. 

The latter test consisted of my body laid out in various angles while swallowing barium, an Elmer's glue like substance but less tasty, along with sodium bicarbonate crystals in order to produce gas. Strict orders were given to not burp. The end result was not pleasant. Think about the standard science fair volcano and you get the picture; not a pretty sight.

Day 3:   Easy day of testing. Lots of waiting for appointments. Good thing I am a patient woman. Pun intended. ;)

Day #4 of pre-lung transplant evaluation- Met with the social worker, the psychologist, the financial coordinator, the GI folks and lastly the rehab center. All went well except the GI appointment. I was unable to complete the esophageal manometry. They were not able to push the tube down my nasal passage into my stomach. Sinuses are too inflamed. As much as I wanted to get this over with I am grateful they were sensitive to my discomfort. The next time they try it will be with sedation. One more day- cardiac catherization in the morning- two tubes up the groin into the heart.


Day #5- Successful cardiac catheterization. Doc said he noted no reason to hold up transplant from his findings of my heart. Now I have to wait until the team meets next week. They will review all of the test results and let me know if they think I will be a good transplant candidate. 

Gratefulness AND anxiety

"To protect your thankfulness, you must remember that you reside in a fallen world, where blessings and sorrows intermingle freely." - Sarah Young

Gotta keep this in the forefront of my mind as I do my pre-transplant testing this week.  I'm so thankful for new lungs that are to come AND I'm full of trepidation about the hurdles that need to be crossed to get ready for the operation.  

Time to strap in and ride the roller coaster.

 

Being purposeful now.

We have spent the last four days in Georgia with my Mom, Sister, Aunts, Uncles and lots of cousins.  I am reminded again of how blessed I am. We had an incredible spread of wonderful food on Thanksgiving with enough leftovers to allow us to graze for days.

 My family loves me.  I feel their support and blessings as I travel tomorrow.  Our children will go back to Athens to be with friends while Tom I head to Durham, NC.  I will spend this week at Duke hospital completing pre-transplant testing.

I have been purposeful in not thinking about what this coming week holds.  There are some intense and invasive tests to get through in the days coming up.  I have been purposeful in trying my best to be fully present while being here with my family;  not allowing my mind to wander to the worries of the what if's.  I will continue to take life one day at a time, one moment at a time.

Life is fleeting.  There is a time and place for everything.  Now is the time for rest.  I choose peace in the present knowing the future will come and when it does, I will be ready.

I cry

When peace cannot be found
And sleep won't visit me tonight
A restless mind that I can't tame
I walk the floor I call Your name
Finally silence and the tears begin to fall

I Cry 
And You're the one who hears me calling
I fall 
So easily but You're there to catch me
Say the words that heal me
I'm safe when I'm with You
You touch my eyes and I can see

Oh the comfort that You bring
When nothing else can reach inside
Sympathetic friends are all around
Their soothing words fall to the ground
In silence I feel You here with me

I Cry 
And You're the one who hears me calling
I fall 
So easily but You're there to catch me
Say the words that heal me
I'm safe when I'm with You
You touch my eyes and I can see

Song by Russ Taff

Rebelling and relinguishing

"I think it would be wise if we head toward transplant."  the doctor said.

For years I have been waiting to hear these words.   Relief and resistance comes at the same time.  How sweet to think the struggle to breath could come to an end, how terrifying to think of The End.

"What if I refuse and say not now."  I ask.

"I don't know if you will survive another exacerbation."

My mind begins to reel out of control.  I fight my defense to argue , "You don't  know me.  You don't know how I bounce back."  The audacity of this man to predict my future.  "Do You think you are the first doctor to tell me that this disease will kill me." 

After the surge of panic is over I can see this doctor is not trying to  predict my future, he is not telling me how it's going to be, he's not telling me what to do, he's just stating his opinion based on his knowledge of the facts on paper.  He is kind and compassionate. 

I remind myself to lay down my shield, there is no need for defense, no need to rebel.  I am in control,  I am in power.

There is a part of me that is relieved and ready to relinquish; wanting to lie down and float on this new current wherever it will take me,  knowing there are rapids up ahead.  There is part of me that clings to shore, afraid of the water, fearing that I may drown.
 .

Thoughts for today.

I do not think of myself as fragile.  I do not think of myself as sick.  Denial?  maybe but I don't think so.  I know the facts but I have defied the odds long enough that I assume the stats don't apply to me.  I know I will die one day, everyone does eventually.  That day seems far off, always in the future.

28 days in the hospital, a new personal record.  I block the outside world.  Blankets hang on my window, tis easier to sleep with less light. I am so very tired.  10 steps to the bathroom is too far when dragging an IV pole, an oxygen monitor and a nasal cannula pumping precious oxygen.  10 steps leaves me gasping.

My world is shifting, priorities changing.  What really matters?  Breathing.  What used to be natural is now a calculated task - 3 liters at rest, bump to 5 to go to the bathroom.  The obnoxious alarm blares when I refuse to listen to my body and go e-v-e-r sooooo  s  l  o  w  l  y.  I adjust to a  snails pace.

Is this permanent or a bump in the road?  How long can you be in end stage lung disease before it's the end? 

Living in the In Between

I am lost.

I stand on jello.

My body is not right.

13 days on antibiotics and still a fever.

When will this end?

New lungs await.....someday.

But not today.

Today I am lost.

Grave Robber

This present life can be unbearable at times- too many struggles, too many losses, too much confusion. Even our greatest joys are fleeting, tinged with the sadness that they will not last, all is temporary. An eternal perspective is needed to counterbalance the weight of this world. There is more then what we see; more then what we know. Someday our journey here will come to an end and then the real living begins.

This song is to be played at my funeral. I am not anticipating this event any time soon but I like to keep in mind the lyrics; they bring me great comfort and courage. Some day all will be made right, all will be good. May I walk faithfully until then.

"There's a step that we all take alone
An appointment we have with the great unknown
Like a vapor this life is just waiting to pass
Like the flowers that fade, like the withering grass

But life seems so long and death so complete
And the grave an impossible potion to cheat
But there's One who has been there and still lives to tell
There is One who has been through both heaven and hell
and the grave will come up empty handed that day
Jesus will come and steal us away.

Many still mourn, many still weep for those that they love who have fallen asleep
But we have this hope though our hearts may still ache
Just one shout from above and they all will awake
And in the reunion of joy we will see Death will be swallowed in sweet victory

When the last enemy is done, from the dust will come a song
Those asleep will be awakened, not a one will be forsakened
He shall wipe away our tears, He will steal away our fears
There will be no sad tomorrow, there will be no pain and sorrow

Where is the sting, tell me where is the bite?
When the grave robber comes like a thief in the night.
Where is the victory, where is the prize?
When the grave robber comes and death finally dies." -Petra

Summer is the Time to Celebrate.

July is the month I was born. July is the month I celebrate my life. Each birthday reminds me of how blessed I am to be alive, to be able to breathe without oxygen (most of the time), to be able to raise my children, love my husband and live my life.

I walked up a hill the other day. When I reached the top I stopped and cried. My tears were for the struggle I felt in my chest, air does not come easy these days. I cried for my friends, many were much younger then I, who can not walk up hills anymore, I cried with gratefulness for I had done something I couldn't have done a few months earlier.

I am stable. Again. I celebrate because I can.

A favorite song -

So much pain and no good reason why
You've cried until the tears run dry
And nothing else can make you understand
The one thing that you held so dear
Is slipping from your hand
And you say

Why, why, why
Does it go this way
Why, why, why
And all i can say

Somewhere down the road
There'll be answers to the questions
Somewhere down the road
Tho' we cannot see it now
And somewhere down the road
You will find mighty arms reaching for you
And they will hold the answers at the end of the road

Yesterday i thought i'd seen it all
I thought i'd climbed the highest wall
Now i see the learning never ends
And all i know to do is keep on walking
Walking 'round the bend singing

Why, why, why
Does it go this way
Why, why, why
And all i can saysomewhere down the road
There'll be answers to the questions
Somewhere down the road
Tho' we cannot see it now
And somewhere down the road
You will find mighty arms reaching for you
And they will hold the answers at the end of the road

Why not take the plunge?

Since a bi-lateral, double lung transplant  is the "cure" for cystic fibrosis many have asked how come I don't just go ahead and get this procedure done.  There are plenty of times when my sentiments are the same.  I'm tired of being in limbo, struggling to maintain my health only to have infection drag me down again.  Enough already, out with the old, in with the new, let's get on with the next chapter in this book of my life.

Like most problems in life the answer of transplant is not simple.  The variable and complexities are many but can be narrowed down to a prime directive that dictate who gets lungs and when:  The doctors' priority is to keep you alive, so simply put, when you can live longer with transplant then without then they are ready to give you new organs.  Statistically speaking, the average lung recipient lives five years after transplant.  Ugh, the harshness of math, cold and calculating yet conveniently clear and comfortably measurable;  the language of science is black and white.  Other considerations for transplant such as quality of life, cost of care and the psychological/emotional impact of chronic illness are left to drown in the murky,  muddy waters of  feelings, beliefs and ethical dilemmas.

Life is simple.

GOING HOME.

Again.

Grateful.

Today's Longings

Entering day five of the second hospital stay of this year. I have not been "well" since the beginning of the year. I spent three weeks in February in the hospital, went home tired, completed two rounds of out patient antibiotics with no real relief so I'm back at UT hospital.

I am discouraged. Seems I've developed some new challenges. My oxygen saturation level is not stable. My hemoglobin continues to drop. I received a blood transfusion today. Now the questions are why is my hemoglobin low? Will my body respond and begin to hold onto the red blood cells that were replaced today. If not, then???????/

My experience with chronic illness is that it throws life off kilter. Getting better only to get worse again is demoralizing. I long for consistency.

Constantly fighting the resentment due to missing out on events, laying in bed on beautiful days, wrestling with the "big picture" so much that it is exhausting to think of the the daily necessary details of life AND at the same time acknowledging that I am one of the "lucky one" leaves me on an emotional see saw ride, up and down, up and down. I long for steadiness.

What does tomorrow hold?

Trying to remember who I am.

A few years ago if you would've asked me who I am then I would've spouted off a list of what I do. The list would vary depending on when on the time line you asked but may have included any combination of the following: wife, mom, counselor, professor, speaker/teacher, realtor, landlord, property manager, bus driver, social worker, home school teacher, case manager, program director, board member, grant writer...... the list would've been long because I was busy. I enjoyed being busy. I enjoyed setting and obtaining goals. I enjoyed multitasking. I enjoyed the controlled chaos of juggling family and career. I enjoyed doing.

If you ask me today who am I then you will get a different answer; depending on who's asking and my mood, I might say that I am a domestic goddess. This sounds so much more luxurious then homemaker. Or I might say I am a psychology researcher conducting a long term field study on child development i.e. a homeschooling Mom. I might even say I am a professional patient helping to identify the flaws in our current health care system (and there are many).

However, ever so slowly and painfully, I am coming to understand that who I am is different then what I do. Because of the "gift" of sickness, I do not do nearly as much as I used to do; nor do I do as much as I want to do. I do less but I am more; or at least more aware of who I am.

Wow, it's late and I am not sure I am making sense. Time to stop writing; ending this entry with this quote- “I am so clever that sometimes I don't understand a single word of what I am saying.” ― Oscar Wilde

Resurection Day

Setting aside all arguments, not getting caught up in the understanding (or lack of), choosing to dwell on the hope of all hopes, resting in pure goodness. This is what my belief looks like today.

Today I am reminded that I am not the only one who has been amazed, bewildered and surprised after being disillusioned, despaired and demoralized.

Today is a good day.

Tethered to reality

Today I went to lunch with friends to the Dam deli down by the Ocoee Dam desperately needing to get out of the house, tired of being inside. I wore my oxygen, carrying my portable tank like a backpacker out for a hike. I am accepting that I need O2 for comfort. I describe this like a luxury, an accessory, like I prefer my tennis shoes over my heels because they are more comfortable.

Before today I chose not to wear my oxygen, I didn't "need" it. I could compensate. I used to front; to make up for my shortness of breath by slowly walking. I would stop every 10 feet or so to catch my breath, standing still, trying to appear casual, looking closely at a bush or a sign, taking my time strolling. This used to be more comfortable for me for once I got where I was going, once I set down then the shortness of breath would go away and I would go about life like everyone else; Almost....... I got along fine as long as I did not move too much, talk too much or God help us all, laugh too much. Any of these activities could trigger a coughing fit that would violently shake, rattle and roll my body until everything settled down once more.

Fronting is not an option right now, strolling does not work, Walking for just a short distance leaves me gasping and coughing, not a pretty sight. So today I chose to wear the nasal cannula tethering me to earth, my lifeline that keeps me grounded. You can't avoid looking sick when you have O2 flowing up your nose. It's quite apparent something is wrong. The secret is out, all the world knows you are not right. I suppose I will get used to this new level of exposure. I struggle with people knowing something so personal about me so quickly, first impressions and all that. They see a sick woman.

I am sick AND I am so much more. After resisting for so long how sick I am slowly coming to terms. Again. I am at a new level of need, perhaps permanent, perhaps not, time will tell. May I accept reality as it. May I stay tethered, learning to live within my limitations and soar above the challenges at same time.

Sticky keys

The 'h" and "g" key sometimes stick on my lap top. I will be typing along not even realizin tat I am missin out on tese keys until i proof read later. It's better that way, if I proof read while I am typin then I will be constantly correctin myself. Te flow is missed.

Rite now I am missin the flow of my life. Seems like I am constantly stoppin, assessin, am I doing tis or that right. If I try harder, ponder more, smell te roses, rest, play, work and perfectly balance my life will I be appier? more satisfied? tranquil? ealty?

The last one is particularly tricky? ow much do I ave to work at being healthy. Work being te operative word here. Feels like I am always fitin a slippery slope of disease. I spent 3 weeks in te ospital in February. Wen I left I did not feel "riht" but tey had done all they could do; a full course of antibiotics.

Wehn I went for my follow-up appointment te culture came back positive. Te bacteria in my lungs was still there. Time to start anoter round of anitibiotics, tis time outpatient; tis time accompanied by a nitly fever, more congestion, lower oxyen saturation levels and no enery.

Today I laid on my deck all day, te oxygen teterin me like te man on te moon so I don't float away. I am very aware that I am limited rit now, tryin to live my life within different parameters. I can only ope that witout all my keys the messae will still come through; although I'm not quite sure what I am sayin. I'm just sayin.